health and psychosocial needs of lgbt older adults study final report... · health and psychosocial...

FINAL REPORT

Health and Psychosocial Needs of LGBT Older Adults

Mark Brennan‐Ing, PhD1, Stephen E. Karpiak, PhD2, and Liz Seidel, MSW3

AIDS Community Research Initiative of America (ACRIA)

230 West 38th Street, 17th Floor

New York, NY 10018

Center on HIV & Aging

Prepared for:

3656 North Halsted, Chicago, IL 60613-5974

1 Mark Brennan‐Ing, PhD, Senior Research Scientist, ACRIA, 230 West 38th Street, New York, NY 10018. (212) 924‐

3934 ext. 131; (212) 924‐3936 [fax]; [email protected] . 2 Stephen E. Karpiak, PhD, Associate Director for Research, ACRIA. [email protected] . 3 Liz Seidel, MSW, Research Scientist, ACRIA, [email protected] .

AIDS Community Research Initiative of America (ACRIA) 19 September 2011

2 | P a g e A C R I A C E N T E R O N H I V & A G I N G

Contents

EXECUTIVE SUMMARY ................................................................................................ 4

METHODOLOGY NOTES ............................................................................................ 10

INTRODUCTION ........................................................................................................... 11

DEMOGRAPHICS .......................................................................................................... 13

EDUCATION, WORK STATUS, & INCOME ............................................................. 15

RELATIONSHIPS, PARTNER STATUS & LIVING ARRANGEMENTS .............. 17

RELIGIOUS AFFILIATION, PARTICIPATION & SUPPORT ............................... 20

HEALTH STATUS & MEDICAL TREATMENT ....................................................... 20

HIV/AIDS STATUS AND SOURCE OF INFECTION ............................................... 22

VISION & HEARING FUNCTION ............................................................................... 23

MENTAL HEALTH ........................................................................................................ 24

LIFETIME & CURRENT SUBSTANCE USE.............................................................. 25

FUNCTIONAL ABILITY ............................................................................................... 26

SEXUAL ACTIVITY, HEALTH & RISK ..................................................................... 28

SOCIAL SUPPORTS FROM FAMILY, FRIENDS & NEIGHBORS ........................ 34

CAREGIVING ................................................................................................................. 41

USE OF FORMAL SERVICES ...................................................................................... 43



BENEFITS & ENTITLEMENT PROGRAM PARTICIPATION .............................. 49

BARRIERS TO SERVICES ........................................................................................... 50

NEED FOR SERVICES IN THE PREVIOUS YEAR & UNMET NEEDS ................ 52

CONCLUSIONS & IMPLICATIONS ............................................................................ 55



EXECUTIVE SUMMARY

This research study provides one of the most comprehensive descriptions of the health, well‐being and social context of Lesbian, Gay, Bisexual, and Transgender (LGBT) older adults. This effort describes the characteristics of an aging LGBT population residing in Chicago, IL. These data should be used to facilitate policy‐making and program decisions to address the current and future needs of these individuals. The study provides in‐depth data on the health status of the aging LGBT community, including sexual health and concomitant risk behaviors, as well as the challenges of living with HIV. Detailed information was collected on social networks which are critical sources of support for an aging population, regardless of sexual identity. These older LGBT adults will also need to access community‐based formal services as they age. Consequently, this study examines the service utilization patterns and the service needs of this older LGBT group, including unmet need in the past year.

The sample of just over 200 individuals had an average age of 60, 71% were men, 24% were women,

and 5% were transgender or intersex. One‐third reported being HIV‐positive and 94% of this group

were men. Those who were HIV‐positive reported an average age of 55 years, whereas those who

were HIV‐negative were older, having an average age of 62.

• Eighty‐percent of the sample identified as gay or lesbian, 14% as bisexual, and 5% as

queer/questioning.

• One‐third was Black or African American (32%), with the remaining 62% being primarily White.

• Over half of the sample had a college degree or post‐graduate education.

• In terms of work status, 29% were currently working, 13% were unemployed, and 28% were

retired. Nearly one‐third were on disability.

• A sizeable minority were experiencing income inadequacy, with 15% reporting that they did not

have enough money to cover expenses, and an additional 46% just managing to get by.

• Forty‐two percent were home owners and 46% renters, comparable to the 44% home

ownership rate in Chicago obtained from the 2010 Census.

• The majority (55%) indicated that they were not currently in a relationship and 62% reported

living alone.

• Older LGBT adults reported primarily Protestant (23%) or Catholic (19%) religious affiliations,

while 24% reported no affiliation. Nearly two‐in‐five older LGBT adults said that they turned to

their religious congregations for support.



The majority (76%) of the sample rated their health as good or excellent. The older LGBT adults with

HIV, though younger, reported significantly more health problems on average.

• Most (57 %) accessed care from a private doctor/clinic and almost 1/3 received heath services

from a public clinic or hospital.

• Almost 60% indicated having at least a little trouble with vision and 37% reported having at least

a little trouble with hearing.

• Almost half of the HIV+ group were presently smoking compared to 13% for those who were not

positive.

• Current use of alcohol (63%) and pain killers (25%) did not differ significantly by HIV status.

• Twenty‐percent of the sample reported that they were currently in recovery for a drug or

alcohol problem.

• Over 1/3 evidenced having moderate levels of depressive symptoms and 20% had severe

depressive symptomatology. Older LGBT adults with HIV were nearly twice as likely to report

severe depressive symptoms compared to the non‐infected (29% and 14%, respectively).

Among the 71 study participants who were HIV+, the average time since HIV diagnosis was 15 years.

Almost 40% had been diagnosed with HIV in the last 10 years with the majority having been infected

through unprotected anal intercourse.

• Half of this group had received an AIDS diagnosis.

• Nearly all (97%) were on antiretroviral therapy and the majority reported CD4 counts over 500

indicating their HIV infection was well controlled.

On average, older LGBT adults reported 11 people in their social networks, consisting of parents,

family members, friends and neighbors. However, as documented in previous research, older LGBT

adults tend to have friend‐centered networks consisting of “families‐of‐choice” and have less

involvement with biological family members compared to their heterosexual peers.

• Friends were the most likely to be able to provide assistance with day‐to‐day tasks as well as

provide emotional support and advice.



• Older LGBT adults were much more likely to report receiving emotional support as compared to

help with instrumental tasks (43% to 56%).

• Over one‐quarter (27%) of older LGBT adults indicated that they and their neighbors helped

each other on a regular basis.

• The older LGBT adults who were HIV+ were significantly less likely than those who were HIV‐ to

perceive that emotional support was available all or most of the time. The HIV+ group was also

significantly less likely to indicate having received all the emotional support they needed in the

past year.

• Over 80% of the study sample said they did not currently need or use caregiving assistance.

About 20% of the older adults with HIV indicated they could use caregiving support.

• Nearly one‐quarter had provided caregiving assistance to someone during the past 5 years.

This study is one of the first to examine the sexual health of older LGBT adults. Sixty‐nine percent

were sexually active during the past year. Those under age 60 were more likely to report being

sexually active compared to those who were older. Those living with HIV had significantly more sexual

relationships when compared to those who were not HIV infected.

• Older LGBT adults tended to be involved with a partner who was younger (64%).

• Older adults with HIV were significantly more likely to indicate sex was extremely important as

compared to those without HIV, but there were no differences between groups in terms of how

often they thought about sex.

• About 1/3 said that their frequency of sexual activity was what they expected and 60% reported

not having sex as often as desired.

• Forty‐one percent of older LGBT adults indicated that they had avoided sexual activity, either

because of lack of interest or physical problems (e.g., erectile dysfunction).

• In terms of safe sexual practices, approximately one‐third never used condoms during either

anal or vaginal intercourse.

• When asked why they would engage in unprotected sex, 14% of those with HIV said because

they were depressed, while only 2% of those without HIV gave that as a reason.



The study examined the utilization and satisfaction with services at the Center on Halsted as well as

those at local government offices and agencies, HIV‐related services and AIDs Service Organizations

(ASOs), health‐related services, and other older adult community‐based services.

• The most frequently used government services included the Social Security Office (43%),

Department for Family and Support Services, Senior Division/Department on Aging (27%),

Housing Authority (21%) and Medicare and Medicaid Offices (21% and 20%, respectively). Use of

government offices and agencies was greater by the HIV+ older adult.

• The HIV+ older adults as expected used more services at AIDS service organizations and HIV‐

related CBO services.

• There were only two instances where HIV status was significantly related to use of health and

long‐term care services. Older HIV+ adults were significantly more likely to have used case

management (61%) as compared to those without an HIV diagnosis (12%). Also, one‐in‐five HIV+

adults used drug and alcohol treatment/recovery in the past year as compared to 8% among

non‐HIV infected older LGBT adults.

• Senior centers were the most frequently mentioned other older adult community based service

(25%). Clergy, meal/nutrition programs, and legal services were used by about one‐in‐five older

LGBT adults during the previous year.

• Legal services were used by HIV+ people at a rate (32%) twice that of the HIV‐ group (15%).

• The most frequently utilized service provided by COH was the SAGE Congregate Meal Program

(36%) followed by SAGE social and education programs (26%). Approximately one‐in‐ten used

HIV support groups, mental health supportive services, or legal services (11%).

• The non‐HIV infected older LGBT adults were more likely to use SAGE programming at COH,

which may be related to the greater average age in this group.

• Overall, satisfaction with COH services was high with the most highly rated service being the

computer technology center, followed by SAGE social and educational programs, and SAGE

congregate meals.

• When asked what additional services they would like to see COH provide, the most frequently

mentioned were assistance with housing and employment issues, more opportunities for

socialization, and more programs aimed specifically at women.



Older LGBT adults were most likely to indicate using Medicare coverage (45%) followed by private

health insurance (43%).

• Approximately one‐quarter were enrolled in Medicaid and Food Stamps and about one‐in‐five

reported income support either through Supplemental Security Income (SSI) or Social Security

Disability (SSD).

• Only about one‐in‐ten had purchased long‐term care insurance, and fewer (3%) had private

disability coverage.

• Although 14% had served in the armed forces, only 7% received health care coverage through

the Veterans Administration (VA).

• Older adults with HIV were more likely to access Medicaid and Food Stamps (49% and 41%,

respectively) as compared to the non‐HIV positive group (16% and 18%). A similar pattern was

seen when receiving income support in the form of SSI (30% vs. 18%, respectively) or SSD (43%

vs. 10%, respectively).

Fifty‐eight percent of the sample reported at least one barrier to community‐based services. Older

LGBT adults with HIV reported significantly greater number of barriers to services, on average, as

compared with their non‐infected peers (3.9 vs. 2.2, respectively).

• Service barriers included: 1) they did not think they would be eligible to receive free services

(43%); 2) worry about the cost of services (32%); and 3) knowledge of available services and

their location (36% and 24%, respectively).

• Almost 30% thought getting services was confusing and/or difficult and a quarter thought that

they would have to wait too long.

• The most frequently mentioned organizational barrier was that staff was unhelpful or seemed

unmotivated (21%).

• Stigma and discrimination issues were mentioned by approximately one‐in‐ten, namely, feeling

that staff did not like people like themselves or that they would not receive services if they tried.

• HIV stigma also appears to be an issue, with one‐in‐five HIV+ older LGBT adults feeling “staff

didn’t like people like them” as compared with only 6% of the non‐HIV diagnosed group.



• Older HIV+ LGBT adults were also more likely to cite contextual issues, such as disclosure of their

HIV status (18%), difficulty in making or keeping appointments (13%) and childcare issues (9%)

as barriers to care.

Older LGBT adults were asked about their need for services in the past year from a list of commonly

utilized health and social services, whether their needs had been met, and if so, who provided the

help (e.g., family, community‐based organization).

• The average number of services needed in the past year was 2.5 (SD=2.2) and the average

number of unmet needs was 0.6 (SD =0.9); this did not differ significantly by HIV status.

• Half the sample identified socialization as their highest unmet need followed by about 1/4 who

noted one of the following; getting to medical appointments, post‐hospital care, counseling and

someone to call or visit regularly.



METHODOLOGY NOTES

Recruitment of this convenience sample took place in Chicago, primarily at the Center on Halsted but also at various AIDS Service Organizations, health fairs and community events throughout the city. To qualify for participation an individual had to identify as lesbian, gay, bisexual or transgender (LGBT), be 50 years of age or older and speak English as their primary language. Recruitment yielded 233 participants, resulting in 211 usable surveys. Participants provided informed consent prior to data collection. The survey instrument was self‐administered by hand using a printed copy. On average, participants took 45 to 60 minutes to complete the survey. After completing the survey they were debriefed and thanked for their participation. As an incentive participants received a $25 gift card for taking part in this research project. Research methods and materials were evaluated and approved by the Copernicus Group Independent Review Board (IRB).

The survey instrument obtained information on the following areas: (1) demographic characteristics; (2) HIV/AIDS status; (3) physical conditions; (4) informal social supports; (5) caregiving (both receiving and providing care); (6) formal service utilization; (7) mental health; (8) substance use; (9) sexual behaviors; (10) health‐related quality of life; and (11) religion/spirituality. Whenever possible standardized measures with known psychometric properties were used to insure validity and for comparison with other published data. Questions were developed based on items in Research on Older Adults with HIV (ROAH) 4 study, National Social Life, Health and Aging Project (NSHAP)5, and the Caregiving among Older Lesbian, Gay, Bisexual and Transgender New Yorkers study6. When noted in the text, ‘significant’ refers to statistically significant differences at the p <.05 level or greater.

4 Brennan, M., Karpiak, S.E., Shippy, R.A., & Cantor, M.H.(Eds.) (2009). Research on Older Adults with HIV: An in-depth examination

of an emerging population. New York: Nova Science Publishers. 5 Lindau, S. T., Schumm, L. P., Laumann, E. O., Levinson, W., O’Muircheartaigh, C. A., & Waite, L. J. (200&). A study of sexuality

and health among older adults in the United States. New England Journal of Medicine, 357, 762-74. 6 Cantor, M.H., Brennan, M., & Shippy, R.A. (2004). Caregiving among Older Lesbian, Gay, Bisexual and Transgender New Yorkers.

Washington, DC: The National Gay and Lesbian Task Force Policy Institute.



INTRODUCTION

The health, well‐being and social networks of the older Lesbian, Gay, Bisexual, and Transgender (LGBT) population are understudied. As people age they rely on the informal supports in their network for caregiving. In the United States most caregiving is provided by partners and children; LGBT older adults are more likely to live alone and less likely to have children than older heterosexuals. Although significant numbers of LGBT individuals give and receive caregiving from their family of origin some LGBT individuals have been ostracized by their family. Research suggests that LGBT persons are more likely to rely on friends, sometimes referred to as the family of choice, for caregiving and this may prove problematic as friends in the network age and also require assistance. One study of LGBT older adults found that a third of those without partners did not know who would care for them if they needed assistance.7 Without traditional caregivers, these aging adults may rely increasingly on formal support services that may not be ready to meet the needs of LGBT older adults.

Older adult sexuality is often ignored in research despite significant rates of sexual activity in this population. In 2006 the National Health Social Life, Health and Aging Project provided comprehensive information on the sexual behaviors of older adults but did not specifically address LGBT older adults; leaving a need to look specifically at the sexual behavior, satisfaction, and barriers to sexual expression among LGBT older adults. As the rate of substance abuse in the LGBT community remains high, it is also important to further examine substance use, its relationship to sexual activity including sexual risk behaviors.

HIV still disproportionately affects the LGBT community. HIV is now a chronic and manageable

disease that may be further complicated by the comorbidities associated with aging. But our research and that of others shows that today’s older HIV population finds itself again disconnected from family and again facing the challenge of stigmatization. In order to age successfully they will need long‐term caregivers. The combined management of HIV/AIDS and age‐related comorbidities will have a profound impact on an already challenged health care delivery system. The need for caregiving and its critical role in health care management is evident. This is a population at risk. As HIV/AIDS affects greater numbers of older adults, their informal support networks will be challenged to provide needed instrumental assistance and emotional support as they adapt to life with multiple chronic illnesses (e.g., arthritics, diabetes, cardiac disease) that take their place alongside the life‐threatening illness of HIV. Research data supports the conclusions that many in the growing ranks of older adults with HIV, who will be without informal caregivers, will find themselves wholly dependent on an already frayed formal care and services safety net. There is a clear need to better understand the existing social networks of these at risk older adults in order to preserve and expand that safety net to meet the needs as they age with HIV.

Lastly, given the inadequate informal social networks of many LGBT older adults and their expected reliance on the systems of formal, community‐based organizations and supports, it is

7 Met Life Mature Market Institute, Lesbian and Gay Aging Issues Network of the American Society on Aging, and Zogby International,

(2006). Out and aging: The MetLife study of lesbian and gay baby boomers. Retrieved January 1, 2007 from: http://www.metlife.com/assets/cao/mmi/publications/studies/mmi-out-aging-lesbian-gay-retirment.pdf .



imperative that we have a better understanding of service utilization in this community. What services are used? What services are needed? And what are the perceived barriers to services in the community? These data will help policy makers, program planners and service providers meet the needs of LGBT older adults and facilitate their successful aging in the community. Study Purpose

The purpose of this study is to better understand the health and psychosocial needs of the older LGBT population in Chicago as well as differences and similarities between LGBT older adults and LGBT older adults with HIV. Given what is known about the fragility of the informal networks of many of these older adults, it is imperative to gain an understanding of the integration of the systems of formal and informal social care. The goals of this cross‐sectional survey are to provide data necessary for policy makers and program planners to best meet the real needs of this population as described below:

1. To assess the health status of LGBT older adults including physical and mental health problems, health‐related quality‐of‐life, HIV status, and sexual health.

2. To assess in detail the informal social support networks and other caregiving resources that are available to the community of LGBT older adults in Chicago.

3. To determine what resources are accessed within a LGBT Community Center and which services are accessed in the larger community

4. To examine the extent of unmet need for formal services and barriers to service use among LGBT older adults.

5. To examine similarities and differences in use of services and barriers to service use of HIV‐positive LGBT older adults and HIV‐negative LGBT older adults.

6. To examine the sexual behaviors, sexual satisfaction and sexual difficulties among LGBT older adults.

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er LGBT adult6% indicatingad enough moacy was signihat they did n

ANGEMEN

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19 Septembe

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18 | P a g

Figure 7: N

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Figure 8: L

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19 Septembe

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vil ners

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19 | P a g

A majorityadults repdifference(58%) or sroommat

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y of the olderported living ae was not statspouse (11%)e (8%).

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19 Septembe

I V & A G

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ast six months

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r r

eing , or ng in ts 9). s

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RELIGIOUS AFFILIATION, PARTICIPATION & SUPPORT

With regard to religious affiliation, the largest proportion (43%) of older LGBT respondents reported being Christian (23% Protestant and 19% Catholic). Other religious denominations were mentioned much less frequently; Jewish (8%), Buddhist (2%), and Muslim (1%). Eighteen percent indicated that their religious affiliation was “other” (e.g., New Age, agnostic). However, nearly one‐quarter reported no religious affiliation (24%) and 3% indicated being atheist. There were no significant differences in religious affiliation by HIV status.

When asked if having an LGBT identity had negatively affected participation with their religious congregations, most (77%) felt that it had not been a factor. Among those who were HIV‐positive, two‐thirds reported that living with HIV had not affected their participation, while 19% reported they were more involved with their congregations following diagnosis. However, 15% indicated they participate less often than they did before they were diagnosed.

Nearly two‐in‐five older LGBT adults (38%) said that they had turned to their religious congregations for support, and this did not differ significantly by HIV status. The types of support received from congregations varied, but the most frequently reported was spiritual and emotional support, as well as opportunities for socialization. Others reported receiving assistance through counseling, or receiving transportation help, financial assistance or nutritional support. Many noted how their congregations were “gay‐friendly” and welcoming places to go. Those not receiving support were often reluctant to disclose their LGBT identities to the congregations, and/or felt that such information would not be well‐received by the congregation due to homophobia and the anti‐gay stance of their religion.

HEALTH STATUS & MEDICAL TREATMENT

When asked to rate their physical health, a majority of older LGBT adults indicated that their health was good (48%) or excellent (28%). However, 21% reported that their health was only fair, and 3% said they were in poor health. While not statistically significant, older LGBT adults with HIV were less likely to rate their health as excellent compared to their peers (19% and 32%, respectively) and more likely to rate their health as being good (57% and 43%, respectively).

Participants were asked if they had experienced any of 26 health problems in the previous year. On average, 2.6 health conditions were reported. Older LGBT adults with HIV reported significantly more health problems on average (3.1, SD = 2.5) as compared to their non‐infected peers (2.4, SD = 2.0).

As shown in Table One below, older HIV+ LGBT adults were significantly more likely to report a number of health conditions as compared with their peers, including all types of hepatitis, sexually transmitted diseases (i.e., herpes, syphilis), neuropathy, and vision loss. Older LGBT adults who were not living with HIV were significantly more likely to report arthritis and hypertension compared to those who were HIV+, not surprising given the greater average age in the former group, and were also more likely to report “other” health problems as well (e.g., allergies, incontinence, back problems).



Table One:Proportion of Older LGBT Adults with Health Conditions by HIV Status

Health Condition Total HIV+ HIV‐ Arthritis*** 35.9 21.1 43.7 Broken Bones 4.9 4.2 5.2 Cancer 7.3 5.6 8.1 Depression 46.1 52.1 43.0 Dermatological 15.5 15.5 15.6 Diabetes 15.5 12.7 17.0 Hearing Loss 11.2 8.5 12.6 Heart Condition 13.2 12.7 13.4 Hepatitis A** 2.9 7.0 0.7 Hepatitis B*** 6.3 18.3 0.0 Hepatitis C*** 7.8 16.9 3.0 Herpes*** 7.8 18.3 2.2 Hypertension** 19.4 8.5 25.2 Impotence (males only) 13.1 14.9 11.5 Menstrual Difficulties (females only) 6.0 0.0 6.1 Migraines 4.4 5.6 3.7 Nervous System Disorder 4.4 7.0 3.0 Neuropathy*** 14.1 25.4 8.1 Pneumonia 2.4 2.0 2.2 Respiratory Condition 2.4 1.4 3.0 Sexually Transmitted Disease (other)*** 4.4 12.7 0.0 Shingles 1.9 2.8 1.5 Staph Infection 1.9 0.0 3.0 Stroke 2.4 2.8 2.3 Syphilis*** 3.4 9.9 0.0 Vision Loss*** 6.8 15.5 2.2 Other Health Problem* 12.1 5.6 15.6

* p < .05, ** p < .01, *** p < .001, Chi‐square tests of significance

When asked where they go for medical treatment, older LGBT adults were most likely to report a private doctor/clinic (57%), followed by a public clinic or hospital (29.9%). Given that few had served in the armed forces, it was not surprising that only 5% received medical treatment at a Veteran’s Administration (VA) hospital. Older LGBT adults with HIV were significantly more likely than their non‐infected peers to receive medical treatment at a public clinic/hospital (40% and 25%, respectively), and significantly less likely to use a private doctor/clinic (31% and 70%, respectively).

In terms of HIV‐related medical providers, only 3% of older LGBT HIV+ adults reported using day programs at AIDS service organizations (ASOs), but 24% had used services at a Ryan White funded clinic.

When asked about using complementary and alternative (CAM) treatments for medical issues, the most frequently reported was taking vitamins (20%), and 10% reported using either nutritional supplements,

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MENTA

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LIFETIME & CURRENT SUBSTANCE USE

Participants were asked about their lifetime and current (past 3 months) use of tobacco, alcohol and other drugs as shown in Table Two.

Table Two Lifetime and Current (Past 3 Months) use of Cigarettes, Alcohol and other Drugs

by HIV Status (Percents) Substance Total HIV+ HIV‐

Cigarettes *Lifetime 63.3 71.8 58.1

***Current 25.6 48.6 13.4

Alcohol Lifetime 89.6 85.9 91.2 Current 63.0 56.5 66.2

Crystal Meth *Lifetime 12.3 18.3 8.8 **Current 1.4 4.3 0.0

Cocaine ***Lifetime 40.3 57.7 31.4 ***Current 4.8 13.0 0.7

Crack ***Lifetime 20.4 39.4 10.2 **Current 4.3 10.0 1.5

Heroin **Lifetime 10.4 16.9 5.8 *Current 1.0 2.9 0.0

Ecstasy Lifetime 7.1 8.5 6.6 Current 0.0 0.0 0.0

GHB Lifetime 3.8 5.6 2.2 Current 0.5 1.4 0.0

Ketamine Lifetime 2.8 2.8 2.2 Current 0.0 0.0 0.0

LSD/PCP/Hallucinogens Lifetime 24.2 22.5 24.8 Current 0.0 0.0 0.0

Marijuana/Hashish Lifetime 71.4 77.5 68.4

***Current 17.3 31.4 10.4

Poppers **Lifetime 49.3 63.4 41.6 **Current 11.1 20.0 6.7

Pain Killers Lifetime 64.3 56.5 68.9 Current 26.6 28.6 25.4


Participants were most likely to report using alcohol either currently (63%) or at some point in their lifetimes (90%). Approximately two‐thirds of older LGBT adults had used cigarettes during their lives, and 26% were current smokers. A similar proportion (71%) reported having used marijuana/hashish and 17% were current marijuana users. Life time use of painkillers was also prevalent (64%) and 27% reported current use of pain medications. The prevalence of lifetime use of poppers (amyl nitrate) was 49%, with 11% having used poppers in the last 3 months. In terms of other illicit substances, lifetime



cocaine use was 40% (5% currently using), and crack‐cocaine lifetime use was 20% (4% currently using). Twelve‐percent had tried crystal meth, but only 1% reported currently using this substance. One‐in‐ten of had used heroin, but current use was low (1%). With regard to other substances, lifetime use of hallucinogens like LSD was reported by one‐quarter of older LGBT adults (24%), while lifetime use of club drugs (ecstasy, GHB, ketamine) was approximately 10% or less. No one reported the current use of hallucinogens, ecstasy or ketamine, and only one participant was currently using GHB.

Overall, older LGBT adults living with HIV were significantly more likely to report both the lifetime and current use of a number of substances, namely, cigarettes, crystal meth, cocaine, crack, heroin, and poppers. Notably, nearly half of those living with HIV were current smokers compared with only 13% of those who were not HIV‐infected. With regard to marijuana use, while lifetime prevalence did not differ based on HIV status, those who were HIV‐positive were significantly more likely to report current use than their peers (31% and 10%, respectively). However, use of alcohol and club drugs (ecstasy, GHB, and ketamine) did not differ significantly as a function of HIV status.

Twenty‐percent of the sample reported that they were currently in recovery for a drug or alcohol problem, and this did not differ significantly by HIV status.

FUNCTIONAL ABILITY

We asked respondents about any difficulty they encountered with 7 instrumental and 6 personal care activities of daily living (i.e., IADL and PADL, respectively) based on the OARS assessment.12 The task which the sample reported most frequent difficulty was found for the IADL task of housework (25%), such as sweeping or dusting, washing dishes or laundry. Difficulty getting to places out of walking distance (21%) and shopping (18%) were the next most problematic IADL tasks for the current sample of older LGBT adults, while 16% reported difficulty with meal preparation. Less than one‐in‐ten reported difficulty with using the telephone (5%), taking medications (5%) or handling money (8%). The average number of difficult IADL tasks was 1.3 (SD = 2.6), and this did not differ significantly by HIV status. Overall, 37% reported difficulty with at least one IADL task, and older LGBT adults with HIV were significantly more likely to report difficulty with at least one of these tasks as compared with their peers (47% and 31%, respectively). Figure 14 shows the proportion reporting difficulty with each IADL task by HIV status. The overall pattern was for greater proportions of those living with HIV to report difficulty with IADLs compared with their peers, however, only in the case of taking medications was this difference statistically significant.

12 Fillenbaum, G. G. (1988). Multidimensional functional assessment of older adults: The Duke Older Americans Resources and

Procedures. Hillsdale, NJ: Lawrence Erlbaum Assoc.

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27 | P a g

Figure 14:

Older LGBtasks withdressing/uacross a s

Figure 15:

Hand

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mmunity Re

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compared wnd out of bedhe remaining elf (3%).

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19 Septembe

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28 | P a g

The averadiffer signreporting proportio15), only wHowever,all participwith more

SEXUA

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ut their sexuah and Aging Phips during thonships repowas significane likely to replts with HIV reers who wer

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I A C E N T

their most rey HIV status, nd the greaterted their moreported a p 40% reportee involved wiorted that thetheir partner

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19 Septembe

I V & A G

.14 There werxpected given of women (3rtner was mawas transgendartner, while who was yourtner was the d). Age of mo

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AIDS Com

30 | P a g

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Figure 18:

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19 Septembe

I V & A G

GBT adults

vity in the pasan preferred,y was about ad, 34% indicatan they would, older LGBT tivity. In termery (46%) ly physically , 30% said thend one‐quarttheir sexual tus was not

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r 2011

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AIDS Com

31 | P a g

Figure 19:

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19 Septembe

I V & A G

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r 2011

I N G

s lack tly w well m, t g

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AIDS Com

32 | P a g

address seindicatingpercent owere eithnot signifi

Figure 20:

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nts were asker oral sexual that they alwrarely using an.

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19 Septembe

I V & A G

er LGBT adultults. Eighteenissues, and med. HIV statu

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50%

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r 2011

I N G

ts ‐

most s was

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AIDS Com

33 | P a g

However,likely to u

Figure 21:

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I Really WI Really NeWith VeryPartner SaThink RiskFeel DeprThink PartDrunk or With a YoWith an O

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19 Septembe

I V & A G

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more .

nt



SOCIAL SUPPORTS FROM FAMILY, FRIENDS & NEIGHBORS

As they age, people rely increasingly upon their social networks for informal support and caregiving. But as people age, their social networks often decrease in size due to events such as relocation, illness and death.15 For older LGBT adults research suggests this trend of decreasing network size is exacerbated. Many older LGBT adults rely on friends for informal support. 16 Consequently, the social networks of many of these individuals may be inadequate to provide needed levels of support as this population ages. While these friends serve as a critical source of support, they may be less likely to provide supportive care as they will likely face the challenges of aging and may need support themselves.

The current study assessed the presence of potentially supportive people in these networks of older LGBT adults. We asked about the presence and number of support element, frequency of contact, feelings of closeness, and the types of support received from family and friends. These data also allowed us to determine if those network members were “functional.” A functional member of the social network is defined as having monthly face‐to‐face contact and/or talking on the phone at least weekly, and has been used in other large‐scale studies of older adults. Functional social network members are considered to be relatively available to provide assistance in times of need, and it is their presence in a social network that provides a good indicator of social support sufficiency.

Presence of Social Network Members and Functionality. On average, older LGBT adults reported 10.6 people in their social networks (SD=7.4). Those with HIV reported significantly smaller social networks on average as compared with their non‐infected peers (8.9 and 11.5 people, respectively).

As has been documented in previous research on older LGBT adults, there was limited presence of biological family social network elements in the current sample, which was further limited when considering the functionality of these network members (see Figure 22). While 42% of participants reported having a living parent, only 26% of these parents were functional social supports. Less than one‐third reported the presence of a child (either biological or adopted/foster), and less than one‐quarter had a functional child. A similar pattern emerged with regard to grandchildren (i.e., 21% report a grandchild, but only 10% a functional grandchild). And while nearly all older LGBT adults reported a living brother or sister (84%), only 38% reported having at least one functional sibling. Furthermore, half the sample did not report the presence of other, more distant relatives in their social networks. The reasons for the discrepancy between living social network members and functional elements are varied, but include geographic relocation to the Chicago area (likely for work opportunities and the presence of a large gay and lesbian community) and unfortunately, homophobia and estrangement from biological family because of sexual identity. To compensate for the lack of informal family supports, older LGBT participants appear to rely heavily on friends, or so‐called families‐of‐choice. Friends were the most prevalent social network element mentioned (86%), and most of these friends are functional (77%) and

15 Cantor, M. H., & Brennan, M. (2000). Social care of the elderly: The effects of ethnicity, class and culture. New York: Springer. 16 Cantor, M. H., Brennan, M., & Shippy, R. A. (2004). Caregiving among Older Lesbian, Gay, Bisexual and Transgender New Yorkers.

New York: The National Gay and Lesbian Task Force Policy Institute.

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35 | P a g

could be cone of the

Figure 22:

HIV+ oldetheir netwage of thesignificantHIV‐infectmore likedifferencesignificantpresence

The reliannetwork e(1.4), childclose friencategories

*

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Gr

mmunity Re

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considered reeir neighbors

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er LGBT adultsworks compare HIV‐ group atly less likely ted (29%), whly to report ce in the propot, nor were thof functional

nce on non‐kielement repodren (2.6), grnds on averags did not diffe

0

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randchild

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eliable sourcewell.

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s were signifired with theirand concomitto have a funhich is a functhildren (bothortion in the there significa friends was a

n supports amorted when thandchildren (ge and 1.5 neer significantl

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ative of Amer

es of support

etwork Elemenes and Neighb

cantly more lr peers (37% tant older agenctional child tion of the greh living and futwo groups rent group diffealso not signi

mong older LGhat element w(5.0), siblings eighbors. The ly by HIV stat

0.2 0.3

23%

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31

Living

rica (ACRIA)

A C R

in times of ne

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ikely to repoand 21%, rese of their par(10%) compaeater proportunctional) as ceporting a funerences in theficantly differ

GBT adults is was present. N(3.0), and otnumber of sous.

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Functional

)

I A C E N T

eed. Lastly, 4

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rt the presenpectively), likents. Howeveared to older tion of lesbiacompared witnctional grane presence ofrent based on

also evidencNamely, the aher relatives ocial network

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ed by the aveaverage numb(1.8). This cok members in

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19 Septembe

I V & A G

knowing at le

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ional parent ihe greater avegroup was who were noer group whoHowever, theot statistically sibling. The

erage numbeber of parentmpares to 4.9 each of thes

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r 2011

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Considering the importance of friends in the social networks of older LGBT adults, participants were asked how many of their friends were living with HIV, since this would likely impact the ability of this person to provide support given the greater likelihood for health comorbidities as they age. Overall, older LGBT adults reported having 1 friend on average living with HIV. Those living with HIV reported a greater number of friends living with HIV on average (1.6) as compared 0.4 among those who were not HIV‐infected. This finding suggests even greater fragility of the social networks of older LGBT HIV+ adults.

Feelings of Closeness to Social Network Members. When asked about how close they felt to various members of their social networks, older LGBT adults by and large reported having close relationships when these individuals were present. Fifty‐five percent reported feeling very close to parents (24% said they were somewhat close), while 61% indicated that they were very close to their children (29% somewhat close), and 47% reported being very close to grandchildren (33% somewhat close). With regard to siblings, however, feelings of closeness were mitigated with 36% saying they were very close and 33% indicating that they were somewhat close. But again, the importance of the family‐of‐choice for older LGBT adults was evidenced by 68% saying they were very close to their friends, and 30% reporting that they were somewhat close.

Geographic Location of Family and Friends. Suggesting that many of these older LGBT adults had migrated to Chicago from elsewhere, 65% reported that their parents lived outside of the Chicago metropolitan area, while 11% reported their parents lived in the Chicago suburbs. Nineteen‐percent reported a parent in Chicago, but out of walking distance, and only 5% had a parent living nearby (walking distance or same building). With regard to children, nearly two‐thirds lived in the Chicago metro area, but only 17% lived nearby. One‐third had children living elsewhere in Chicago and 9% had children in the Chicago suburbs. Geographic location of grandchildren and siblings was similar, with approximately 55% of participants reporting that these people lived outside of the Chicago metro area and 5% of less had these members of their networks within walking distance. As might be expected, the majority of older LGBT adults reported that their friends lived in the Chicago metro area (77%), with 22% living either in the same building or in walking distance, 39% in Chicago but not in walking distance, and 15% living in suburban areas. The geographic proximity of family and friends did not differ significantly by HIV status.

Receipt of Assistance from Family, Friends and Neighbors. Older LGBT adults were asked about help they received from family and friends, respectively. For both family and friends, participants indicated if they received help with instrumental tasks (i.e., shop/run errands, keep house/prepare meals, drive/escort to places, help with mail/correspondence, help manage money) as well as emotional support (i.e., advice on a big decision, need cheering up, talk about personal/private matters).

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37 | P a g

Figure 23:

As illustraless than exceptionadults repexample, errands, oadults repcompared

Older LGBwith instrcame fromstatus in texceptionmail/correparticipanfrom frien

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ort receiving nd again, greThere were ntypes of suppantly more liktheir peers (9stance from fby HIV status

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amily and Frien

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19 Septembe

I V & A G

o be limited, won, with the ns of older LGmembers. Forhopping/runnof older LGBT to go, as

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On average, ypes of assistars, we asked a

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r 2011

I N G

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AIDS Com

38 | P a g

the level otheir neigemergenchelp to ea

Figure 24:

Nand somefamily andreport nereluctant There weeither fam

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mmunity Re

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of mutual helghbors helpedcies. Howeverach other. The

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ocial Supporthey may also f reciprocity intionship type l, or if they res a trend for ohips, than to pt with a greatstically signifia pattern of iworks.

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f older LGBT asuch assistanct they and thers did not diff

embers of thearticipants ab24. Older LGBparticularly wor hurting theelihood of rep

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adults indicatce was provideir neighbors fer significant

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19 Septembe

I V & A G

ed that they ded only in did not provitly by HIV sta

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m family and We assessed thworks by askinsupport exchd in Figure 25reciprocal eers. This woudifferences wtatus, these dheir informal

r 2011

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uld be were data

AIDS Com

39 | P a g

Figure 25:

Ainstrumensupport (ereported at all. Parindicate wsome morsuch suppavailabilitone‐in‐sixresources

Other R

Other

Grand

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mmunity Re

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Social Support

vailability anntal help withe.g., advice, sif such assistarticipants werwhether they re, or a lot mport was availty of instrumex reported thas during times

Friends HIV+

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dchildren HIV+

dchildren HIV‐

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search Initia

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V Status of Par

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19 Septembe

I V & A G

he availabilityand emotionaolder LGBT adoccasionally, ol support anda little more,%) indicated tonly intermit%). Approxim

m with few ental help the

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ey

AIDS Com

40 | P a g

needed d(19% needthe availa

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Figure 26:

As illustrato indicatwere morsignificant(39% and particularpositive g

0%

10%

20%

30%

40%

50%

60%

70%

mmunity Re

g e

uring the preded a little mability nor the

of emotional compared witable some of l support hadl support, fewded in this reglittle more susaid they neee in the perce

Emotional Sup

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All/Most o

42%

search Initia

evious year. Bmore help, 7% e adequacy of

support, a grth instrumentthe time (17%d not been avwer older LGBgard (49%) asupport duringeded a lot moeptions of em

pport Availabi

26, older LGsupport was adicate the unato indicate hactively), and wth regard to npared with 8%

of Time Som

68%

ative of Amer

But for the reneeded somf instrumenta

eater proporttal help. Near%) or only occvailable duringBT adults repos was the caseg the previoure emotional

motional suppo

lity by HIV Sta

BT adults whoavailable all oavailability ofaving receivewere more likneeding a lot % of the non‐

me of the Time

27%

13%

HIV+

rica (ACRIA)

A C R

maining thirde more help, al support diff

tion indicatedrly equal propcasionally (16g the previouorted that thee for instrumes year, while support duriort availabilit

atus

o were HIV+ wor most of thef support. As ed all the emoely to indicatmore emotio‐infected grou

Only Occas

20%

+ HIV‐

)

I A C E N T

d, instrumentand 5% needfered significa

d that it was aportions indic6%). Howeveus year. Despiey had receivental help. Tw14% indicateing this periodty and adequa

were significae time (42% aseen in Figurotional suppote needing adonal support, up.

ionally N

13%

1

E R O N H

al support waded a lot morantly by HIV s

available all/mcated that emer, for almost ite the greateved all/most owenty‐three ped needing sod. There wereacy based on

antly less likeand 68%, respe 27, the HIVrt they neededditional suppendorsed by

Not at All

11%6%

19 Septembe

I V & A G

as not adequae help). Neithstatus.

most of the timotional suppone‐in‐ten (8er availability of the supporpercent said tme more supe significant HIV status.

ly than their pectively), anV+ group was ed in the pastport. This was24% of the H

r 2011

I N G

ate her

ime port 8%), of rt they pport,

peers nd

t year s HIV‐

AIDS Com

41 | P a g

Figure 27:

CAREG

Older LGBHIV), disaneeded itand 8% resignificantneeding colder LGBreported instrumenhelp with most likelreceived cas caregivassistancedifferenceHIV+ care

0%

10%

20%

30%

40%

50%

60%

mmunity Re

g e

Emotional Sup

GIVING

BT adults werbility or frailt in the past. Eeported havintly more likelcaregiving helBT adults withneeding suchntal tasks of dmobility issuy to be reporcaregiving frovers 22% of the. Twenty‐peres by HIV stategiver.

Got All Ne

39%

search Initia

pport Adequac

e asked abouty. Most (81%Eleven‐percenng needed cary to indicate p (see Figurehout an HIV dh help in the pdaily living (i.ees, post‐hosprted as caregiom paid helpehe time. Howrcent indicatetus in who pro

eeded Nee

54%

ative of Amer

cy in the Past Y

ut their curren%) indicated thnt indicated tregiving in thcaregiving ne

e 28), and 14%iagnosis, 7% past. The typee., shopping, pital care). Pavers (14% aners such as hoever, 10% reped that their covided caregi

ed Little More

21%24%

HIV+

rica (ACRIA)

A C R

Year by HIV St

nt and past nhat they did nthat they hade past, but noeeds. Ninetee% said they hareported curres of caregivincooking, andartner/spousd 21%, respeome health aiported that thcaregiver wasiving assistan

Need Some

16%

+ HIV‐

)

I A C E N T

tatus

eeds for carenot currently a current neot at present.en‐percent ofad needed surently needinng assistance household ces and other ectively), whilides or visitinhey had not rs HIV positivence and if they

e More Ne

14%

1

E R O N H

egiving due toneed assistaned for caregiv. Older adultsf this group rech help in theng caregiving e needed ranghores), to pefamily membe an additiong nurse. Frienreceived the ne. There werey had receive

ed Lot More

24%

8%

19 Septembe

I V & A G

o illness (inclunce and had nving assistancs with HIV weeported curree past. Amonhelp and 5% ged from helprsonal care (ibers were thenal third (30%nds were namneeded carege no significaned help from a

r 2011

I N G

uding not ce, ere ently g

p with .e., e %) med giving nt an

AIDS Com

42 | P a g

Figure 28:

Older LGBprovide exasked parNearly onthat they past two yproviding Participanpartner (2adults wit17%, resprespectivewho was this experconsideracaregiversthemselve

0

10

20

30

40

50

60

70

80

90

mmunity Re

g e

Current and R

BT adults are xtensive carerticipants whene‐quarter (24were currentyears, and 52care and thents were mos20%). Only 5%th HIV were mpectively), andely). Twenty‐tHIV‐positive, rience (46%) aable levels of s indicated thes, but this di

Have NoCareg

67.

search Initia

Recent Caregiv

not only recipegiving assistaether they ha4%) reported tly caring for 2% had provide time since tht likely to rep% reported camore likely tod less likely totwo percent oand those was compared mutual careghat their caregid not differ b

ot Needed giving

1

88.1

ative of Amer

ing Needs by H

pients of careance to both tad provided cathat they hadsomeone, 22ded care betwhe caregivingport caring foraring for a chi report caringo have cared of older LGBTho were HIV+to their peer

giving supportgiving responby HIV status.

CurrentCareg

18

HIV+

rica (ACRIA)

A C R

HIV Status

egiving, but ptheir familiesaregiving assid provided su% said they hween three an episode did r a family meld or neighbog for a friend for a partner/T caregivers re+ themselves rs without an t among the Hnsibilities had .

ly Need giving

8.6

6.7

+ HIV‐

)

I A C E N T

revious resea of origin andistance to othuch assistancehad provided nd five years not differ signmber (44%), or, and 2% foras compared/significant oeported that were significHIV diagnosiHIV communiinterfered w

Needed CarPas

14

1

E R O N H

arch has found their familiehers within the. Of this groucare to someago. The likenificantly by Hfollowed by ar a grandchildd with their peother (15% anthey had carantly more liks (14%), suggity. Twenty‐p

with their abili

regiving in st

.35.2

19 Septembe

I V & A G

d that they es of choice. Whe past five yeup, 26% repoeone within thelihood of HIV status. a friend (24%d. Older LGBTeers (62% andd 25%, ed for someokely to indicagesting percent of ty to care for

r 2011

I N G

We ears. orted he

) or a T d

one te

r

AIDS Com

43 | P a g

USE OF

Older LGBagencies, communitsatisfactio

GSocial SecDivision/DMedicaid Resourceswere the agencies dutilizationHIV+ used(2.6 and 1

Figure 29:

Veter

***Dep

mmunity Re

g e

F FORMAL

BT adults werHIV‐related sty‐based servon with servic

Government Ocurity Office (Department oOffices (21%s Administratleast frequendiffered signin than their pd significantly1.2, respective

Use of Governtests of signif

**

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rans Adminstra

**Chicago H

pt. of Human R

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search Initia

L SERVICE

e asked abouservices and Avices. Participces provided

Offices and Ag43%), followeon Aging (27% and 20%, restion in the prently reported ficantly by HIeers. On avery more serviceely).

nment Offices ficance]

*Medicaid Off

*Medicare Off

ation/VA Hosp

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Housing Author

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**Dept. on Ag

ial Security Off

ative of Amer

ES

ut their use ofAIDs Service Opants were alsby the Cente

gencies. The ed by the Dep%). Next werespectively). Twevious year. Uservices. As sV status, withrage, older LGes of this type

and Agencies

0% 10%

fice

fice

ital

lice

rity

min.

ing

fice

6%

HIV+

rica (ACRIA)

A C R

f services obtOrganizationsso asked specr on Halsted.

most frequenpartment for e the Chicago wenty‐percenUse of the Veshown in Figuh HIV+ older GBT adults use on average

by HIV Status

% 20% 3

12%

13%

9%

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+ HIV‐

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I A C E N T

tained from gs (ASOs), heacific question

ntly utilized sFamily and SHousing Authnt had also usterans Adminure 29, use of LGBT adults med 1.7 servicethan did thei

[* p < .05, ** p

0% 40%

31%

37%

34%

31%

39%

39%

1

E R O N H

overnment olth‐related ses about their

ervice in this upport Servichority (21%) ased the Depanistration (8%f government more likely toes (SD=1.9). Tir non‐infecte

p < .01, *** p <

50% 60%

%

%

19 Septembe

I V & A G

offices and ervices, and outilization of

group was thces, Senior and Medicarertment of Hu

%) and Police offices and o report such Those who weed counterpar

< .001, Chi‐squ

70%

65%

r 2011

I N G

other f and

he

e and uman (12%)

ere rts

uare

AIDS Com

44 | P a g

Hsignificantdiagnosis followed and Howareported which is lireported

Figure 30:

***Ch

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mmunity Re

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HIV‐related Setly more likel(see Figure 3by Test Positiard Brown Heusing serviceikely due to tusing 2.9 HIV

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Test Positive A

Howard Brown

cago House &

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search Initia

ervices and ASy to report th30). The AIDS ive Aware Neealth Center (s at either thesting and coV‐related/ASO

lated Services

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n's AIDS Project

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de Help Center

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nter on Halsted

***BeHIV

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SOs. As expehe use of ASOFoundation o

etwork (41%),38%). Howeve Center on Hounseling progO services, sig

and ASOs [* p

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o

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HIV+

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cted, older LGOs and HIV‐reof Chicago wa the HIV/AIDSver, approximHalsted or Hograms at thesnificantly gre

p < .05, ** p < .

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GBT adults whlated servicesas the most frS services fro

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30% 40%

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E R O N H

ho were HIV‐s than those wrequently meom the Centernon‐HIV infe(23% and 17%On average, oe 0.3 reported

01, Chi‐square

% 50%

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19 Septembe

I V & A G

positive werewithout an Hentioned (57%r on Halsted (ected LGBT ad%, respectiveolder LGBT add by their pee

e tests of

60%

57%

r 2011

I N G

e IV %), (38%) dults ely), dults ers.

AIDS Com

45 | P a g

Hdentist/deOutpatiencare (see One‐thirdorganizathaving recprogramsthird of painstitutionyear.

Figure 31:

Drug/A

mmunity Re

g e

Health and Loental clinic, wnt hospital caFigure 31). Sld reported goion (HMO). Bceived mentas. Case managarticipants (2nal long‐term

Use of Health tests of signif

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Alcohol Treatm

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Long‐term/Co

search Initia

ng‐term Carewith nearly onre was reportlightly less thaing to a privaBehavioral heal health treatgement, whic9%). Relative

m or continuin

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tient Hospital

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Medical Clinic

ergency Room

ontinuing Care

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ative of Amer

e Services. Thne‐half of oldeted by 38% oan one‐third te medical clealth and substment and 11h can serve aely few older ng care (5%). O

m Care Service

0% 5% 10%

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rica (ACRIA)

A C R

he most frequer LGBT respof participantshad used theinic and one‐stance use tre1% utilizing dras a bridge to LGBT adults hOnly 3% repo

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uently utilizedondents repos, while 19% he hospital emein‐ten had uteatments werug or alcohoother servicehad accessed orted using ho

us [* p < .05, **

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d service in thorting such ushad received ergency roomtilized a healtre also utilizeol treatment/res was reporthomecare seospice during

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5% 40% 45%

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19 Septembe

I V & A G

is area was the in the past inpatient hos

m in the past yh maintenanced, with 27% recovery ted by nearly ervices (17%) the previous

p < .001, Chi‐sq

% 50%

49%

r 2011

I N G

he year. spital year. ce

one‐or s

quare

AIDS Com

46 | P a g

There wecare servicomparedand alcoholder LGBdiffer sign

Ocommunitabout oneApproximin this growere morexplainedeligibility twice as liused 1.0 o

Figure 32:

Meal/N

mmunity Re

g e

re only two inces. Older HId to those withol treatmentBT adults. Thenificantly by H

Other Commuty based serve‐in‐five oldemately 15% haoup based on re likely to usd by the greatin many senioikely to reporof these servi

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nstances wheV+ adults wethout an HIV /recovery in te average numHIV status.

nity‐based Sevice (25%). Clr LGBT adultsad attended aHIV status eme senior centter average agor programs. rt such utilizaces on averag

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ere HIV statusre significantdiagnosis (12the past yearmber of healt

ervices. Seniolergy, meal/ns during the p self‐help gromerged in oners (35%) as cge of the formWith regard tion as their pge (SD=1.2), w

ervices by HIV

5% 10%

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s was significaly more likely2%). Similarly,r, this proportth and long‐te

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I A C E N T

antly related ty to have used, while one‐intion was onlyerm care serv

ere the most frams, and leg(23%, 21% anst year. Signif Older LGBT athose who wd the age critces, HIV+ oldnd 15%, respt differ signifi

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1

E R O N H

to use of head case managn‐five HIV+ ady 8% among nvices used (2.

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, *** p < .001,

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28%

19 Septembe

I V & A G

lth and long‐gement (61%dults used drunon‐HIV infect6, SD=2.3) did

entioned were used by ectively). nces in servicut an HIV diagtive (7%), equired for re more thander LGBT adulV status.

Chi‐square tes

35%

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r 2011

I N G

term ) as ug ted d not

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ts

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AIDS Com

47 | P a g

Uasked aboCOH was programs(26%). Apsupportivsignificantwas the nnamely, caverage aCOH, whil

Figure 33:

17 Services a

0%5%

10%15%20%25%30%35%40%45%50%

mmunity Re

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Use and Satisfout non‐HIV/Athe SAGE17 Cos were the nexpproximately oe services (11tly more likelon‐infected ocongregate mage in this grole the averag

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19 Septembe

I V & A G

Participants wvice provided cial and educology center ntal health ts were the re 33). Howevng at COH, to the greatevice providedfer by HIV stat

001, Chi‐squar

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r 2011

I N G

were by ation

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AIDS Com

48 | P a g

Older LGBhelpful, soparticipatstatus (sesomewhasaying thisocial andhelpful, 2helpful an

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19 Septembe

I V & A G

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r 2011

I N G

e (i.e., eir

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or



BENEFITS & ENTITLEMENT PROGRAM PARTICIPATION

Participation in government benefit and entitlement programs is shown in Table Four. Older LGBT adults were most likely to indicate Medicare coverage (45%) followed by private health insurance (43%). Approximately one‐quarter were enrolled in means‐tested entitlements such as Medicaid and Food Stamps/SNAP. Approximately one‐in‐five reported income support either through SSI or SSD. Only about one‐in‐ten had purchased long‐term care insurance, and even fewer (3%) had private disability coverage. Very few (2%) received General Assistance. Finally, although 14% had served in the armed forces, only 7% indicated health care coverage through the VA. Ten‐percent of older LGBT adults indicated that they were not participating in any of these benefit or entitlement programs.

There were a number of significant differences in benefit and entitlement program participation based on HIV status. Older LGBT adults without an HIV diagnosis were significantly more likely to be enrolled in private or long‐term care insurance plans (58% and 12%, respectively) as compared with their HIV‐positive peers (14% and 1%, respectively). Conversely, older adults with HIV were more likely to receive means‐tested entitlements such as Medicaid and Food Stamps (49% and 41%, respectively) as compared to the non‐HIV positive group (16% and 18%, respectively). Older LGBT adults with HIV were also more likely than their counterparts to receive income support in the form of SSI (30% vs. 18%, respectively) or SSD (43% vs. 10%, respectively). The HIV+ group was also more likely to be receiving General Assistance (6%) compared to those without HIV (1%).

Table Four Benefits and Entitlements by HIV Status (Percents)

Program Total HIV+ HIV‐ Medicare 44.5 51.4 40.1 Medicaid*** 26.8 48.6 16.1 Private Health Insurance*** 42.6 14.3 57.7 Long‐term Care Insurance** 12.4 1.4 12.4 Private Disability Insurance 2.9 1.4 3.6 SSI (Supplemental Security Income)* 21.5 30.0 17.5 SSD (Social Security Disability)*** 21.1 42.9 9.5 VA (Veterans Administration) Health Coverage 6.7 5.7 7.3 General Assistance (GA)* 2.4 5.7 0.7 Food Stamps/SNAP*** 25.8 41.4 18.2 Not Enrolled in Any Program 9.6 11.4 8.8




BARRIERS TO SERVICES

We asked older LGBT adults about perceived barriers they faced when accessing community‐based services (see Table Five). These barriers can be grouped into access barriers, staff and organizational barriers, and contextual issues. Fifty‐eight percent of participants reported at least one barrier to service, and the average number of barriers reported was 2.8 (SD=3.5). Older adults with HIV reported a significantly higher number of barriers, on average, in comparison to the non‐HIV infected group (3.9 and 2.2 barriers, respectively).

As a group, access barriers were the most frequently mentioned, ranging between 23% and 43%. Financial considerations were prominent, with 43% saying they didn’t think they would be eligible to receive free services, while 32% worried about the cost of such services. Knowledge of available services (24%) and where one could obtain such services (35%) were also frequently mentioned. Twenty‐eight percent felt that the process of getting services was confusing and/or difficult, while 23% thought that they would have to wait too long.

Table Five Perceived Barriers to Community‐based Services

Service Access Barriers Valid Percents Don’t think services exist around here 23.5 Don’t know where to go for services 34.5 Would have to wait too long for services 23.4 Services cost too much to afford 31.7 Don’t think eligible for free services 43.1 Process of getting services too confusing/difficult 28.1

Staff/Organizational Barriers Valid Percents People at the agency not helpful/Don’t seem motivated to help 21.2 People who run services don’t like people like you 10.8 Afraid you won’t be treated if you go for services 9.9 People at the agency don’t speak the same language as you 5.5 Have trouble telling people at the agency what you need 8.4

Contextual Barriers Valid Percents Its’ hard to get there (transportation) 17.2 Don’t know what to do with kids when getting services 4.0 Someone might find out HIV status 6.9 Hard to make or keep appointments 7.4 You have to take care of other people 6.5 Worry that family/friends would be against the service 5.0

With regard to staff and organizational barriers, the most frequently mentioned was that staff was unhelpful or seemed unmotivated which was endorsed by over one‐fifth of older LGBT adults. Stigma and discrimination issues were mentioned by approximately one‐in‐ten, namely, feeling that staff did not like people like themselves or that they would not receive services if they tried. Less than 10%

AIDS Com

51 | P a g

mentionetheir need

Figure 35:

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***

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of contextual o get to the sin the procesSeven‐percefriends would

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vices Exist Arou

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ties with staff

tatus [* p < .05

ems with tranpproximatelyg services. Chd difficulty in if they access

der LGBT adulpeers, there ed on HIV stae domains. Iny nearly half ohey could accroup reported

0%

ntments

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anguage

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otivated

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HIV+

rica (ACRIA)

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f, namely, lan

5, ** p < .01, *

nsportation ty 7% were conhildcare (4%) amaking or kesed services.

ts with HIV rewere a numbatus. As illustrn terms of accof the HIV+ grcess services d these acces

5% 10% 15%

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+ HIV‐

)

I A C E N T

nguage barrie

** p < .001, Ch

opped the lisncerned that and other careping appoin

eported signifber of significrated in Figurcess barriers, roup, while aplocally or felts barriers.

% 20% 25% 3

15%

19%

19%

19%

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Meals Brought to the Home. Four‐percent of older LGBT adults reported that they needed meals brought to them at home during the previous year (n=8). Of those, two‐thirds indicated that they had not gotten all the help they needed. Sources of help for this need included family and friends (44%), while 56% received help from community‐based organizations (i.e., Vital Bridges, Meals‐on‐Wheels). HIV status was not significantly related to the need for meals at home, whether this need was met, or who provided the help.

Housekeeping and Home Care. Nearly one‐in‐five older LGBT adults reported that they had needed help with housekeeping or personal care in the home over the previous year (18%). Eighteen‐percent of those needing such help indicated that they did not receive all the help they needed with housekeeping and care in the home. In most cases, family, friends and neighbors supplied the needed assistance (45%), although the Division of Rehabilitation Services (DRS) provided assistance to 18% of those with this need. An additional 38% received help from other sources, usually other social service agencies (e.g., Catholic Charities), the VA, or paid helpers. The need for housekeeping/home care, the extent to which this need was met, and source of assistance did not differ significantly by HIV status.

Home Repairs. Help with home repairs was needed by 23% of older LGBT adults, and of those who needed this help, 26% did not receive all the help they needed. Friends and neighbors were the most likely to have provided this help (48%), while family members helped 17% of the time. Only 6% had turned to the Illinois Housing Development Authority Home Modification Program. Approximately one‐third had hired a contractor/paid helper or asked for assistance from the building superintendent or management. The need for home repairs, as well as unmet need and source of support did not vary by HIV status.

Help Finding a Job. Eighteen‐percent of older LGBT adults reported that they had needed help finding a job in the past year. Of those, slightly less than two‐thirds (64%) did not receive all the help that they needed in this area. Nearly two‐thirds (64%) turned to family and friends for help in finding a job, while 18% had received help from Chicago House. The remainder had mostly received help from the other agencies, such as the Illinois Department of Employment Services or Jewish Vocational Services. The need for help in finding a job, unmet need, and sources of assistance were not related to HIV status.

Personal or Family Counseling. Counseling assistance, either personal or family, was the third highest in terms of need in the previous year (29%), and over one‐quarter (27%) who needed this assistance reported that they did not receive all the help they needed. Relative to other service needs, family and friends were not relied upon extensively (26%). Nearly one‐in‐five (19%) had turned to COH for such assistance. The remaining two‐thirds received help with counseling from private therapists, hospitals (including the VA), and other community‐based organizations. The need for personal and family counseling, unmet need, and source of help did not vary significantly by HIV status.

Post‐Hospital Care. Approximately one‐in‐five (21%) older LGBT adults reported needing help following a stay in the hospital in the previous year and most (86%) received all the help they needed in this regard. Sources of assistance for help after a hospital stay was largely provided by friends and neighbors (54%) followed by family members (30%). Fourteen‐percent had received assistance from a



case manager. Twenty‐four percent received help from other community‐based organizations. HIV status was not significantly related to need for post‐hospital help, unmet need, or source of support.

Someone to Take to Doctor/Clinic. The second most frequently mentioned need by older LGBT adults in the past year was assistance in getting to the doctor’s office or a medical clinic (32%). Only 10% reported not receiving all the help they needed in this regard. Family (41%) and friends/neighbors (54%) were the most frequently named sources of assistance, although 10% had relied on a case manager and 15% had used some other source of help (the PACE program was most often mentioned). The need for an escort to the doctor/clinic, unmet need and source of assistance did not vary significantly by HIV status.

Someone to Call or Visit Regularly. The need for a regular contact, either by a visit in‐person or by phone, was indicated by one‐quarter of older LGBT adults. Seventeen‐percent reported that they did not have their needs in this area met. Support in this area was equally likely to come from family (41%) as compared with friends (44%). Six‐percent had utilized the SAGE friendly visiting program, and 9% had used the services of another source, with medical personnel being the most frequently mentioned. HIV status was not significantly related to need, unmet need, or source of assistance in this area.

Visiting Nurse, Home Health Aide, or Home Attendant. Need for this type of homecare service was reported by 12% of older LGBT adults and nearly one‐third who needed such help indicated they did not receive all the assistance they needed in the past year. Thirteen‐percent relied on family members and the same proportion relied on friends. Seventeen‐percent had turned to a case manager for help with homecare services, but most (58%) had turned to some type of home health care agency for assistance. The need for this type of assistance, unmet need and source of support were again unrelated to HIV status.

Help with Government Entitlements. Help navigating the entitlement system was an expressed need for 23% of older LGBT adults in the past year. Approximately one‐third had turned to family (15%) or friends (15%) for assistance in this area. Twenty‐one percent had used Ryan White Case Management, and all of these individuals were HIV positive. About half (49%) had turned to some other social service organization for help with entitlements. The need for help with entitlement in the past year differed significantly by HIV status, with 40% of older LGBT HIV+ adults indicating this need as compared with 14% of non‐HIV diagnosed individuals. However, the proportion whose needs were not met and the source of assistance did not differ significantly by HIV status.

Someplace to Socialize or Meet People. Need for socialization opportunities was the most frequently mentioned expressed need among older LGBT participants in the current study. Over half (51%) expressed the need for more socialization and 14% reported that they did not receive all the help they needed in this regard. COH was the most frequently cited source of providing a place for socialization (39%), while 19% had turned to some other community‐based organization such as a church, ASO or Howard Brown. One‐quarter (24%) had received help in this regard from friends and neighbors, and 19% reported family members as their source of assistance. The need for socialization and unmet need in this area did not differ as a function of HIV status. However, older LGBT adults who



were not diagnosed with HIV were more likely to name COH as a source of socialization help (75%) as compared with the HIV+ group (33%).

CONCLUSIONS & IMPLICATIONS

This research study data conducted for COH provides a comprehensive assessment of the present and emerging needs of their aging LGBT community. There are several subgroups within this study which include those defined by gender and those defined by HIV serostatus. Many significant differences were seen when HIV status is a factor. Some of these differences are most evident in health measurements. But it is noteworthy that the HIV+ group, who are overwhelmingly men, have an average age of 55, while those without an HIV diagnosis were 62 years‐of‐age on average. This age difference is one contributing factor to observed group differences base on HIV serostatus.

This sample of older LGBT adults reflects the immediate environs of Chicago. Nearly half own their residence, with most others having secure housing. However, an almost equal percentage stated they were unemployed and were barely able to meet expenses. This population has social networks that are largely reliant on friends rather than families of origin. The majority lives alone and do not have a long‐term partner/relationship. Without the typical supports intrinsic to close family connections and those derived from long‐term relationships, this group of older adults will confront increasing financial challenges as well as increased isolation. Sustaining the costs of a residence by a single aging person, with a fixed income, reduced work options and decreased opportunities for socialization, creates high risk for successful aging. This is especially true of the HIV+ group within this study. Additionally the burden of chronic disease can make normal routines difficult and strain financial resources.

The vast majority of the sample report being in good health, and many receive coverage for healthcare via private insurance. But rates of smoking, substance and alcohol use, and depression may represent a risk to their current favorable health status. Over half of the HIV+ group currently smokes cigarettes on a regular basis. This behavior places them at very high risk for multiple illnesses and must be addressed. One‐in‐five of older LGBT adults were in a substance abuse recovery program, and others may also be at risk for substance use problems. Outreach to encourage enrollment in these programs is needed.

Depression is the single most consistent predictor of poor health outcomes. The high rates of depressive symptoms in this population reflect a major need for targeted mental health services for older adults in general, that appear to be exacerbated among the older LGBT population. To address this problem, encouraging those with depression to seek care from their health providers is needed, as well as public education campaigns that describe the symptoms and management options of depression. Depression in the LGBT population in part reflects the internalization of social stigmas that contribute to social isolation and destructive self‐medication behaviors.

The sexual health of these aging LGBT people provides data that is new and emerging. The study shows clearly that regardless of HIV status large proportions of older LGBT adults engage in sexual behaviors that place them and partners at risk for STI infection including HIV, regardless of HIV status. These data support the need for STI and HIV prevention programs that target the LGBT older adult as well as



education and social media campaigns that are inclusive of people who are every age and sexual identity. Sexual desire and behavior is not the domain exclusively of young people. That misperception must be changed.

Barriers were encountered by this population as they sought aging support services outside of the COH programs. Those perceived barriers can only be ameliorated and removed by communication and interaction between the LGBT communities, especially COH. In order to achieve successful aging the older LGBT adult must be able to access all community based services. This will require outreach and education to mainstream senior service providers to ensure that they are culturally competent when engaging older LGBT and/or HIV‐positive adults, and understand the special needs and characteristics of these populations.

The service need that was identified as having the highest priority and highest level of unmet need was opportunities for socialization. Socialization has long been recognized as a critical determinant of successful or healthy aging. As one ages social networks reduce in size as friends die or can no longer travel due to disease burden. A spouse who survives the death of a partner is often left with surviving children and other relatives who share this loss and provide support. This is not typical of the aging LGBT adult. Research shows that those older adults with strong social networks often have a higher quality of life, longer life spans and better health status. Many studies show that strong social support may be a protection against cognitive decline. Socialization allows a person to feel connected and to create meaningful relationships. Catalysts for this include social gatherings, as well as home visits and even the telephone call or connections that occur on line. Providing opportunities for socialization that are welcoming and accessible for large numbers of aging LGBT people with diverse interest and personalities is a massive challenge. Addressing that challenge will define the near future of LGBT centers and result in better health and well‐being for those whom they serve.

health and psychosocial needs of lgbt older adults study final report... · health and psychosocial...

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